Why patients are the new rockstars in pharma

Anyone who reads my column on a regular basis will know my views on patient-centricity within the pharmaceutical (and broader life sciences) industry. The significant volume of buzz around the concept is only meaningful when it translates into action with companies engaging with patients in a meaningful way.

But it strikes me we are on the cusp of seeing a much deeper integration between patients and the industry, which draws parallels with how it already interacts with the scientific and medical community.

Anyone who reads my column on a regular basis will know my views on patient-centricity within the pharmaceutical (and broader life sciences) industry. The significant volume of buzz around the concept is only meaningful when it translates into action with companies engaging with patients in a meaningful way.

But it strikes me we are on the cusp of seeing a much deeper integration between patients and the industry, which draws parallels with how it already interacts with the scientific and medical community.

Any good research-based pharma company is built on the foundations of strong science and relationships with healthcare providers. As such, as we have seen significant interaction between these groups, with medical doctors either advising companies or taking on roles internally (noting that this should be in a transparent way). Likewise, academic researchers have developed an ever-closer bond with their commercial counterparts over the last 20 years. For example, I remember the outrage during the late 1990s, when I was completing my doctorate, around a prominent Oxford scientist who decided to use his knowledge to set up a biotech. It simply wasn’t accepted by many at that time. Play that forwards and we now have a rich and vibrant biotech industry in the UK, which is underpinned by great academic science, drawing on its personnel and deploying technology transfer to bridge the gap between research and practical application. Academics often sit on the boards of commercial companies, who in turn fund research and everyone wins.

If we now consider that as a model for the evolution of patient-centricity, I believe we are seeing the same transformation. The way in which social media democratised access to health information gave the patient a voice – and a new way for the pharma industry to listen to it. Next, proactive patients went a stage further, using social media to empower themselves as epatients, or Patient Opinion Leaders, sitting alongside more traditional medical Key Opinion Leaders. The industry started listening to them – and learning more about what happens outside the clinic.

Now, rather like those academic scientists, patients are realising they can only do so much on the outside. The harsh reality is that their real-world expertise in a particular disease area needs to be allied with commercial funding and processes to deliver change. So we are now seeing the next evolution of this journey – patients being employed by the industry, sitting on advisory boards or even setting up their own companies. To name just a few examples, consider rare disease visionary Nick Sireau (AKU Society and Findacure) now working as Patient Engagement Director with AstraZeneca, epatients like Kerri Sparling (sixuntilme.com) advising commercial organisations and others who go even further in setting up and taking roles at novel health startups, like Manny Hernandez (Livongo Health), Michael Seres (11Health) and Jeff Dachis (One Drop).

At the sharp end of medicine – the commercial end where payers are playing a more prominent role versus regulators in determining whether patients can access new treatments – the science underpinning R&D is only valuable if it translates into practical benefit in the real world (and at the right price). In line with this, I think we are seeing a rebalancing of the foundations of pharma – real-world patient experience is becoming as important as the science that seeks to solve their problems.

And to the cynics who say ‘if you can’t beat them join them’ let me say this – most patients will support any company that can help them live better, longer lives. So if you’re a patient or caregiver (carer) wanting to help, perhaps it’s time to consider working more closely with pharma or even getting a job on the inside.

We’ve already seen scientists and doctors become CEO’s of major pharmaceutical companies – who will be the first epatient? I don’t think we are that far away and it will be a better industry for all when we get there.